Monday, August 15, 2016

A new direction...

One of the scarier parts of dealing with CDKL5 is making any type of medicinal change. Even if I can swear up and down a medication isn't working, actually stopping said medication and introducing a new one tends to put me on pins and needles. We have played this game a handful of times in the past 17 months, and each time I get the same feelings...always doubtful, always excited, always eager and excited, and always, always petrified.

Tomorrow morning Sonzee will start her new medication of Sabril. I practically begged her neurologist for us to start last week, but we had to wait for the SHARE program to receive all of the paperwork. I was so thankful that we wouldn't have to wait until her EEG, which is scheduled for the 29th. This weekend was pretty bad in the land of spasms and seizures for Sonzee. As much as I was fearing the side effects of the new drug, I am more fearful of the damage that can occur from these types of seizures. But then, in true Sonzee fashion, as soon as I wrap my head around a new change and feel a tinge of confidence, she has a great 24 hours where the doubt creeps into my mind.

Is this the right choice? What if we ruin everything for her? What if her vision is effected and there are no therapeutic benefits in terms of her seizures? What if the keppra while not doing much, was doing something? I know, I know, I can't and shouldn't play the "what if" card. I can't play the "question my choices" game either. I am the first person to say "you can't do that to yourself"...but it always happens.

So tomorrow we embark on a new journey. One that we will hopefully look back on and say "this was the best move", "I can't believe we were so worried about this", and "Wow! Can you imagine if we decided not to start Sabril". No matter what, I know that we made the best choice at this time with the information we have, and I am extremely eager to see where this new "pick your adventure" chapter leads us.